Thursday, September 29, 2011

Getting Close

"If you knew that hope and despair were paths to the same destination, which would you choose?" ~Robert Brault

I went to work yesterday. I realized I am taking a chance but by getting sick, I left unexpectedly and didn't want to leave too many things undone for my substitute. I was very surprised by a gift of cash along a long sheet of butcher paper signed by my coworkers. The cash amount was large and I'm pretty stunned at the outpouring of support, both financial and emotional. The money will pay for quite a few days of my family staying in a SF hotel, which had been something we were concerned about. I have posted the sign in the hallway to my bedroom so I can see positive affirmations each night as I go to bed. People have also generously offered me childcare for my youngest, among other things, all of which are so kind.

I work with great people, in a great school, and that is why I love my job.

It looks like the surgery is a go. My cold is clearing up and is not moving into my chest. I am not sneezing or coughing. The worst is that it seems to be in the larynx and my voice is shaky but that isn't dangerous. I have taken today and tomorrow off work just in case - I don't want to go in and catch something new. But as it stands I'm strong enough for surgery.

My legs - my thighs - are weak. I don't understand it. I thought it was post-flu weakness but it has not gone away. It's making some of the household things I wanted to do difficult. I began thinking the cancer was growing fast in the liver and causing it, but I got a call from the doctor today that my latest scan showed I'm holding steady - no new growth. My bloodwork is good and they will see me at 6:00 a.m on Monday.

I confess, this surgery is making me nervous. The recovery part of it makes me nervous. I've been through surgery before and not had the easiest time, and this is the mother of all surgeries. But, I will get through it.

I will be cancer-free. And, I will dance at my youngest son's wedding.

Okay, I suck as a dancer, so I probably won't.

But, I'll be there.

(I owe an apology. I was sent the book, When Cancer Hits Home, to review. It was a well-written book - by an oncologist - that gives you an excellent overview of the top cancers and standard of care treatment. But, this surgery came up much quicker than I expected, so I have not completed my review. I will. In the meantime, it's a good book. Buy it.)

Monday, September 26, 2011

No Prob...

A salesman just called me. Normally, I don't answer my home phone - ever. It's my spam phone, and one I give out to everybody I don't want to talk to since I don't answer it.

But for some reason, I accidentally did. It must be my sickness making me slightly insane.

"Hi, I'm trying to reach Ann?"

"This is she."

"Hi Ann. This is Brad from California Family Fitness. I see you used to be a member and canceled your membership, and I was just wondering why?"

"Well, you see Brad, I've been diagnosed with Stage IV Breast Cancer, and there is no Stage V. I've been pretty busy with surgeries and chemo and am not well enough to exercise."

"No prob, no prob. Ann, we'd be happy to offer you a two week trial to get you back."

Momentary stunned silence from me.

"No thanks, Brad. Next week they are removing most of my liver, and like I said, I have stage IV cancer and it's possible I won't even be alive next year. So I don't think I'm going to be joining a fitness club."

"No prob, Ann, no prob. Well, you have a good night."

I am so wishing, since Brad thinks this is not a problem, that HE could be the one to deal with it instead of me.

Cut off your breast? Lose your hair? Perpetual chemo? The omnipresent thought of your 14 year old having to watch you die?

No prob.


Sunday, September 25, 2011

I can't get sick, I'm having surgery

Thursday, as I as wrapping up my workday, I felt the beginnings of an illness. My stomach began rolling around in my belly, and I experienced a lower GI tract cramp.

Uh oh.

Attendance clerks in schools are better than the CDC in knowing whether communicable diseases are making the rounds, so I asked ours if kids had been going home sick this early in the year? Oh yes, she said, lots of colds and some stomach virus.

Stomach virus. And me, with no immune system, and out in the middle of everyone about to have a potentially lifesaving surgery. My mind flashed to all the kids I'd seen that day - ones who had borrowed pens, ones who had asked me questions, ones who had breathed on me. I thought of the teachers who are too dedicated to go home and and sick ones who had come to talk to me about substitutes.

I can't get sick. I can't miss this surgery.

As another cramp hit, I went over to tell my boss and the VP's secretary that there was a possibility that I wouldn't be there the next day. I am about as dedicated to my job as anybody can be - I truly love it. I don't think I called in sick once last year - my healthy year. But, I'm not taking chances. I want this surgery.

If my stomach so much as growls in the morning, I'm not going in.

My son and I both had an after school hair appointment, and as I watched him get his cut, the nausea began. I realized that I was going to have to cancel my portion of the haircut or something seriously unpleasant was about to appear on the shiny floor of that trendy salon. As I pulled out my husband's checkbook to pay, Cynthia either saw that I was green or didn't want to touch anything I had held, because she told me to come back and pay her at my next appointment.

I got home and went to bed. The intestinal pain got worse and worse. My stomach was roiling and the cramps were constant. I sat on the toilet off and on with no success. It felt a lot like when I'd had appendicitis; strong pain and a need to have a BM but nothing happening, at least at that end. I began throwing up which didn't relieve the pain at all.

It was clear that the Navelbine I had the day before had - after all this time - finally decided to take on the persona of its nickname - NavelBIND.

As the night wore on, I got worse and worse. I began vomiting in one of those nightmarish "sit on the toilet and vomit into the trashcan" scenarios, although sitting on the toilet was fruitless. I was great pain, and growing progressively weaker, so much so that I was having trouble walking. I was shaking, with beads of sweat all over me. I seriously considered calling 911. I really thought it was possible I wouldn't make it through the night. The only reason I didn't was that I had no fever, and that I didn't want to wreck my chances of having this surgery because of a hospitalization.

But, I knew that diarrhea that was gurgling inside needed to come out. My stomach was rolling like I was 8 months pregnant and making noises like a fussy baby, but all was blocked - to keep up the pregnancy analogy, it's like I was only 1 cm dilated and already screaming, "get it out of me!" I was afraid if the floodgates didn't open, I'd begin throwing it up from the other end - I was already past the bile portion of the regurgitation process and into the dry heaves. I wanted to take a painkiller, but wasn't sure I could keep it down, plus they also can cause constipation. Fortunately, at about 2:00 a.m. the dam broke; the Navelbine unbound. I instantly felt better. I spent some time going back and forth, from bed to toilet with diarrhea, but the pain was gone and I no longer felt like it was a potential emergency.

I slept the entire next day. I didn't even awaken until about 4:30 pm. When I emerged, I was exhausted, dirty, weak, stinky. I sat with my family for a few minutes and then went back and took another 3 hour nap. At 7:30, I got up and watched some TV with them, feeling a bit more normal. I went to bed at 11:00 and slept all night and woke up in the morning on the road to recovery.

Whew. I have an upcoming, potentially lifesaving surgery. I should be recovered before then.

Saturday, I was shaky all day and not very hungry, but I ate a little soup and some crackers and a couple of Popsicles and watched a bunch of HBO shows on my iPad. I vowed I'd go for a walk on Sunday and try to get some strength back and would be back to work on Monday to prepare for my time off.

About 9:00 pm last night, I started to feel it. A sore throat. It was faint at first, and I ate another Popsicle to try and cool it off, but I knew what was coming. And, I was right. An hour later, the throat was sorer and the back of my nasal passages were burning.

Shit. I'm getting a cold. I have an upcoming, potentially lifesaving surgery. I can't get sick!

This morning, I woke up with a full-fledged cold. Sinuses stuffed, lips chapped, nasal passages leaking constantly.

Will they even do a surgery on somebody who has a cold? Maybe a minor surgery but not a big one like this. I was told to try to get in as good a shape as I could before this operation, "Keep moving" said my SuperDoc.

And, for four straight days now, I've been sick. I've done none of the things on my to-do list and I'm behind in everything and definitely in pretty bad physical shape.

I am still struggling to walk, my legs are spaghetti legs. Two illnesses back to back with no immune system to speak of (except what Neupogen gives me) is not something that easy for a cancer patient to recover from.

I already decided not to jeopardize this surgery by going in to work tomorrow. Me, calling in with a mere cold? Unheard of. Yet, I must. This is one situation where my health has got to come first. I have to try to protect that surgery.

I meet with the anesthesiologist on Tuesday, and we'll see what he says about my cold.

Tomorrow, it's more tea, more HBO, more chicken soup and as much sleep as my body can handle. And, maybe a walk in the fresh air for strength.

Here's my worst thought: what if they don't do surgery now, but instead give me a future surgical date. What if the cancer grows so much between now and said future date (possible) that they change their mind and decide not to do it at all?

You know what that means?

I will have been killed by the common cold.


Wednesday, September 21, 2011

Last Chemo - for six weeks or so

I had my second "last chemo" today. It was a bittersweet experience as I have again been chatting with people and enjoying their company, and by the time I return, many of them will be done with treatment and the group will be new again.

It's funny - even when what you are doing isn't particularly fun, when you've been doing it regularly for almost two years it becomes an integral part of your life; one that you feel you'll miss when it's gone.

Of course, I probably wouldn't say that about routine waterboarding or being forced to go to classic car shows every weekend, so it's all relative.

Who knew chemo was more fun than looking at old cars?

As I settled into my barcalounger, I loudly announced my upcoming surgery to anybody who would listen, and even those who had headphones on.

Hey, not everybody gets this surgery, you know? People should hear about it.

There was lots of interest and people said they'd pray for me.

As an aside, I am no longer the youngest woman in the chemo room. One young lady is being treated for stage III breast cancer. She is 26 years old. I wish that I was still the youngest person in that room, I must say. It's not because she's cuter than me and I'm jealous of all the cancerous old men eyeing her. It's awful that anybody gets cancer, but in truth, it's more awful that she got it than me.

As the last drip slid into my vein, I said a temporary good-bye to my fantastic nurses and my chemo acquaintances, and I walked out the door, free of that shabby yet familiar infusion room until at least a month after surgery.

Speaking of - I have a lot to do before surgery, including paperwork. My advanced directive is done but I need one more signature to make it legal. My FMLA paperwork has to be signed and I need to get the doctor to do his part. I'm going to splurge and hire a housekeeper, even though my house shouldn't be shown to strangers. Two years of cancer has rendered it pretty dirty, and I wasn't exactly Alice to begin with. It's time somebody does it, and it clearly won't be me.

I also need to rent a recliner to sleep in for my post-surgical recovery. Getting up and down out of bed is always the hardest after surgery so I'm going to get a chair with a lift. I'm no dummy anymore.

I don't know if I can wear my own clothes in the hospital or not but maybe I should buy some loose, low rise sweat pants. I have a history of flashing hospital personnel and it's not because I'm pervy. It's totally their fault - the hospital johnnys they always make you wear are way too big for me. Even the small size wraps around me twice, and for some reason they never have smalls. So, I get the large johnny that I have to wrap around myself three times and the armholes are right where your breasts are and the pants don't tie tight enough to stay on so they slide down when you sleep, get out of bed, etc.

On the other hand, this is a teaching hospital. I'll be visited by my high-powered Super Doctor, fellows, residents, interns, med students, nurses, nurses-in-training and others who will need easy access to my long incision, so maybe clothes you can swim in is good, even if you end up showing your girly parts, both missing and intact, to all who come in.

Hey, if that guy on Dancing with the Stars doesn't mind showing his burned face to the world on national TV, I shouldn't mind showing my misshapen reconstruction and short and curlies to a few medical professionals. I will draw the line if an accountant shows up.

I also need to make arrangements for my family to stay...somewhere. Ouch. A week in a San Francisco hotel and it's not a vacation.

That might hurt more than the surgery.

I also found out I can request a private room, and they are given out when available. I'm doing that tomorrow so I can prevent the assault of daytime TV that I know any roommate I have will perpetrate upon me.

I'll beg, cry and bribe to get a private room.

Do you think playing the cancer card will do any good?


Friday, September 16, 2011

Alice through the Looking Glass - Surgery Scheduled

“When I used to read fairy-tales, I fancied that kind of thing never happened, and now here I am in the middle of one!”
― Lewis Carroll

Like Alice through the looking glass, nothing is what it seems, and everything is different than it should be.

25 months ago, had somebody told me that I would have surgery in which the entire right lobe of my liver, part of the left lobe and my gallbladder would be removed; the skin of stomach cut stem to stern, and have a hospital stay possibly verging on two weeks, I would have been horrified, frightened and completely disbelieving.

Yet, in my new world behind the mirror, this is the best news I could possibly have heard.

You are cutting out most of my liver? Thank you!

“when she thought it over afterwards it occurred to her that she ought to have wondered at this, but at the time it all seemed quite natural”
― Lewis Carroll, Alice's Adventures in Wonderland & Through the Looking-Glass

Last Monday, I went for a surgical consult to the UCSF Helen Diller Cancer Center. My metastatic tumors, all three of them, are confined to my liver; such confinement is rare in Metastatic Breast Cancer World since cancer cells like to take up residence everywhere. By the time mets are found, it is usually in several organs and/or bone. When it's in the liver, it's usually all over the liver. In fact, for the statistic lovers among you, near as I can tell, only 5% of women have mets limited the way I have, and that is referred to as Oligometastatic.

Combine my limited disease with my wonderful, smart, and up-to-date oncologist, who is definitely ahead of the cancer curve, and I have been offered the chance to remove this cancer; a chance it appears that very few women get.

Why is that? Among oncologists, metastatic breast cancer is considered a systemic disease and it's always been believed that surgery does no good because the cells are everywhere and will pop up like mushrooms somewhere else. New research is showing that sometimes cells may be limited and not be seeded everywhere, and surgery can help prolong life - or even be curative. Times are beginning to change, and having an oncologist on top of new thought is one of the luckiest things that has happened to me.

Right now, all I have is google and my chemo-damaged brain, but from my searches it appears that very few breast cancer patients have had liver resection surgery. The retrospective study linked above mentions 80, and I found another with 60 and another with less than that, and that seems to be it, at least that I can find online.

Rebel that I am, I will have this rare surgery.

The SF doctor I met with is as high-powered as they come. A CV (that's a fancy word for resume) a mile long, an MD and PhD, a cancer researcher with dozens of published papers to his name. My oncologist described him as aggressive, which is exactly what I want. My oncologist also described me to him - as aggressive. Which is exactly what I am. An appointment was set for last Monday, so I took the day off and headed toward San Francisco.

It was a beautiful sunny day as my husband and I drove the 90 miles to The City. The cancer center had valet parking, thank goodness. Looking for parking in that city would give me a heart attack long before cancer gets me. We found the center easily and with a half an hour to spare before our appointment.

We were called to meet with an intern, who did a basic exam, and then we met with the doctor. I had to bring my scans on CD, and so we waited while the doctors went over it and my paperwork, than did another minor exam. (Of course, they were already familiar with me and my case and had spoken to my oncologist.)

Then I heard the wonderful words, "You are a candidate for the surgery."

He told me that they would do an open surgery and actually do a sonogram directly on my liver to find any hidden cancer. Any surprises they found, they would either cut out or do microwave ablation to kill it. They would take the entire right lobe (which has two mets), and as much of the left lobe (with one) as they can to leave me with liver function. They would also take my gall bladder because it's in the way and, he said, has no useful function. "You'll never miss it."

The liver does regenerate and that happens pretty quickly - in a month or so.

I will be in the hospital for about 7 days if all goes well, which is a bit daunting but in reality is a small price to pay for the potential for long term survival.

However, I definitely intend to buy a TV jammer. Sorry future roommate, but you will not be watching Dr. Phil, the View and the Home Shopping Network all day long. I can't heal with daytime TV on and neither can you. Like my children, I will let you have TV from 8:00 pm to 10:00 pm.

While this surgery is rarely done on breast cancer patients, the ones who have gotten it - those 200 I have found online - have changed their odds from 0% five year survival to 46% five year survival. Some have even gotten ten years, and a few from early studies are still alive.

I intend to be in that group.

I was told I needed to have some scans and that I would need a few weeks off chemo before the surgery, so I was expecting it to happen around the first of November. Shockingly, today I got the phone call that the surgery is scheduled for October 3rd.

By October 13, which is Metastatic Cancer Awareness Day, I should be home and recovered enough to not care that it's Metastatic Cancer Awareness day. It will no longer pertain to me.

By October 27th, my oldest son's 25th birthday, I should be recovered enough to nag him about giving me grandchildren - and mean it.

I feel extremely lucky. It may not work, and cancer may come back. But, I know I will have done everything possible. And, if mental determination counts for anything - this cancer is not returning.

I'm done with it. And, I'm having the miracle surgery to get it out.


Why, sometimes I've believed as many as six impossible things before breakfast.
~Lewis Carroll

Friday, September 9, 2011

Yes, still alive!

When you keep a cancer blog and you don't post for a while, well, people start to think the worst.

But, I haven't been not posting because I'm very sick or even dead.  I've been not posting because I have energy!  The blood transfusion was remarkable.  I'd planned to write a book review, but instead, I cleaned out my closet. And, by that I mean this cheapo fashionista took every single thing out of her entire closet, bought slimline hangers and a bunch of cascading shirt and skirt hangars and reorganized everything.  I have two shirts in each space to make room, I have my skirts and  pants all cascading down in military fashion.  I now have my closet color coded, organized by season, with everything on the same size hangar!  No more mish-mash!

And, it will be easy to clean out when I am dead, if I do die,  which we could NOT have said before.

But, there's more!  I cleaned out the kitchen drawers too.  They were getting crumbs and spills and gross things and I'd open a drawer to get a spoon and think, "how gross" and then close it and then maybe nap with the spoon before I had the energy to get out my yogurt.  But, thanks to the transfusion, I took everything out, cleaned all the silverware, cleaned and lined the drawers!

But, wait, there's even more!

At some point I had taken down one of my two kitchen valences to see if I could dye them.  But, you know, cancer got in the way.  Who has the energy to dye things?  So, one was up and one was down for months.  But, not any more!  I went to BB&B and also got new valances.  And, put them up!

And, I have a new mattress topper!  So comfy.

I love this transfusion thing and have decided it needs to be a regular part of my chemo rotation.  Unfortunately, I seem to drop a point each week and I'm starting to get tired again.  But, what a great three day weekend - I did normal chores and felt normal.

But, wait, there is one more thing:   My phone rang today - at the most inconvenient time I might add, right in a meeting with my boss - and it was UCSF on the line.  

I go for my surgical consult this Monday.

Yes, Monday the 12th.

I'm trying not to think about it too much.  He could easily say, "We can't do it, your tumors are in the wrong place."  

Which, would be kind of cruel after a Sacramento to SF drive but I'm not under the illusion that doctors inspect your films ahead of time and make that decision quickly.

Especially since after work today I had to get copies of all my PETs and CTs on disk to bring with me.

I'm not a fan of San Francisco and wish this could happen in my town, but since it can't, I'll just say this:  they told me the doctor has valet parking.  Whew.

It's a good thing I cleaned out my closet, now I can find a sweater to wear in that freezing city "by the bay."